Did CRT stop working?

I had a CRT-P implanted 3 weeks ago. The EP thought my extreme exhaustion (in spite of an EF of 45 and appropriate meds for cardiomyopathy) may be due to the wide dyssynchrony of my ventricles. Within minutes of some adjustments at the one week post-implant device check, I felt completely normal for the first time since being diagnosed with heart failure and Left Bundle Branch Block in Jan 2013. I have been in bed for the vast majority of the last 13 months, so I know I need to transition back into normal life slowly as I have lost stamina and muscle tone. Maybe I have been over doing it, but for the last two days I feel like I am back to pre-implant functioning. I am too tired to get out of bed and feeling very discouraged. Any ideas why this is happening? Should I give more time to see if resting helps? Should I let the EP know? I'm afraid my CTR has stopped working although I don't think it would as I've been careful to follow all the post-surgery rules. There don't seem be be many CRT implantees on this site, but any thoughts would be appreciated.

13 Comments

CRT-D

by me2 - 2014-03-18 06:03:32

Marinade,
I've had a CRT-D since 2010. I think it highly unlikely it has stopped working. The best thing you can do is contact your cardiologist or the cardiologist office. Nurses can often be very helpful.

It may need time

by Glyn - 2014-03-18 07:03:31

I had a medtronic crd-d fitted last oct,my left ventricle was contracting more than 140 microseconds after the right. I had some immediate improvement but the heart can take up to six months to re model and give full benefit.
If you are concerned check with the pacemaker team.
After an anterior MI which nearly finished me I am fitter now than I was before thanks to my crd. Wish you all the best and hope you feel better soon! Glyn

Call your Doctor

by Grateful Heart - 2014-03-18 08:03:27

There are quite a few of us on this site. I have a CRT-D also for HF and LBBB and a few other abbreviations.

Call your Doctor if you are not feeling well. Like you said, you have lost some conditioning so that may have something to do with it BUT, do not stay in bed unless that was your Doctor's orders. If you find it too difficult to walk.....tell your Doctor that too.

You need to move around, even if it is just walking in the house. That's also a good way to test the CRT, so when you go back to the Doctors and they interrogate your device, they can see what it and your heart are doing upon exertion.

When you are ready, talk to your Doctor about Cardiac Rehab and physical therapy so you can get back to being yourself.

Grateful Heart

Thank you for helpful comments!

by Marinade - 2014-03-18 08:03:52

me2, Glyn, and Grateful Heart,
Thank you so much for responding. You all gave great advice! I have now left a message for my cardiologist and the pacer clinic nurse. And I am going to stay out of bed as much as possible, even if it means frequent sit-downs as I move around the house. It was good to be reminded that healing takes time. I feel like I have made three new friends in this sometimes lonely path of heart problems. Thank you!

Rest is the.....

by donr - 2014-03-18 10:03:42

.....LAST thing you need!

Back when I was in my mid-60's a crusty old soldier in his 90's spontaneously tells me at a luncheon "Don if ever you are in the hosp for anything - get out of the bed & WALK! If you don't, you will get pneumonia." Now this man cheated pneumonia 5 or 6 times before his departure at age 96.

I listened to Old Lew & each of the times I wound up in the hosp, I got up & walked - around the ward; around the nurse's station. Anywhere I could go. I became obsessed w/ getting out of bed & walking. Seven yrs ago, I was involved in a serious auto accident - wound up in the Neuro-ICU because they thought I had a broken neck. About an hour after becoming settled & high on Dilaudid for pain, through my stupor I started telling any one who came near that I had to get out of that bed & walk. Man-O-Man, was I a PITA! But to shut me up, as soon as they confirmed my neck was NOT broken, they hustled in the PT lady to start working on me to make me mobile so I would shut up.

Fast FWD to last May - 15 days in bed following abdominal surgery. I felt so crappy I did not want to get out of bed. The nurses gave up on me & I languished on my back for three days - till I told my Wife - You have to MAKE me get out of this bed & walk or I'll never recover. So, dutiful wife forced me to get out of bed & we walked - ONE whole lap around the ward & I collapsed, exhausted! As soon as I recovered, we did it again. I staggered, I leaned on my IV bottle pole; I stopped & leaned against the wall; I gasped for air; I groaned; I moaned; but I made it.

They sprung me from "Da Joint" on the Sat before Memorial Day. At home I walked laps around the upstairs - about 80 feet per lap. As many times per day as I could make it.

Now for the cruncher. In Mid June, Wife had an appt w/ our cardio. He walked into the mop closet he called an exam room & said "Don I need to talk to you!" I replied "Doc , it's my Wife's appt." He replies "I know, but you need help right now."

What he told me was:

1) at my age (77) I could plan on 4 days recovery time for every day I spent in bed - that was AFTER I got up & about on a permanent, active basis.

2) You start deteriorating as far as muscle tone & conditioning are concerned on about the 2nd day in bed. Further, if you watch for the signs, you can notice how fast you go down hill.

3) You come back slowly & must force yourself to be active & keep pushing yourself WITHOUT overdoing it.

4) He made a cardiac Rehab program available to me for as long as i need it. Called "Stage 3" - a do it yourself at your own rate affair. Three visits per week to the local Hosp Cardiac Rehab ctr. The RN's & Techs monitor BP, Pulse & Oxygen levels periodically.

Now YOU aren't 77, but you admit to spending the best part of 13 Months in bed.

TIme to discuss rehab w/ your Cardio. There is a program that they can tailor to your needs.

Napoleon, the little French Emperor gave you a motto to work by through this. He said it in about 1806 About warfare, but it is equally applicable to Cardiac Rehab! "In battle, the mental is to the physical as three is to one."

IF your mind does NOT believe you can do it, the body definitely will not be able to do it.

I wish you the best throughout the trying days ahead. Start small & keep increasing what you do in small steps. You have the rest of your life to do the job.

Donr

Cost of Stage 3 Cardio Rehab

by donr - 2014-03-19 12:03:34

Medicare will not pay for mine, But the cost according to the hosp is but $60 per month. Sounds like a good value. this is in a small bedroom community about 40 miles north of Atlanta, GA.

Program is run by an RN W/ a staff of 8 techs. They have an ECG machine & watch us like a vulture watching squirming road kill. If you are talking to one of the people, their head is on a swivel, constantly moving checking on people. It's a good place for you to go.

In Stage 3, YOU establish the pace you want to progress at.

Donr

Thanks Donr!

by Marinade - 2014-03-19 12:03:41

You gave me some sage advice, tough love, and a chuckle about Napoleon. Prior to the diagnosis of sudden onset heart failure, I was very physically active and very much want to get back to it as it was also a major source of my social connections. Just prior to reading your post, I was actually emailing my doc inquiring about cardiac rehab. I know my insurance won't pay for it for heart failure, so I'm looking into paying for it myself if the cost isn't prohibitive.I know the key for me lies in your point #3. I seem to have a hard time knowing how much I can do without over doing it, especially because it takes a day or two for my body to let me know I've done too much. After getting the CRT three weeks ago, I finally felt normal for the first time in over a year and I guess I did way too much and I have been paying for it the last few days. I appreciate your wise words and I am going to do my best to get help in going about this in a healthy way. Best to you.

GH, Will you agree that.....

by donr - 2014-03-20 09:03:37

.....one of the nice things about the Stage Three rehab is that someone EXPECTS you to show up?

I know that having a set time to go in & a crew of nurses & Techs asking where you were if you miss makes a big difference.

At my place, you see the same people every session, so it becomes rather collegial.

Donr

Cardiac Rehab

by Grateful Heart - 2014-03-20 09:03:49

After my monitored sessions ended, I continued and paid on my own for over a year. It was THAT important and comforting to me. Some of the people in my group still attend and have for years. I was comfortable enough to go to a gym on my own after 18 months or so.

It was $70 per month for me and that was less expensive than paying the co-pays 12X a month. The only difference was I was no longer monitored with the portable EKG machine. The Nurses are still there for you if needed and are constantly watching. We had a lot of fun in our group.

I highly recommend Cardiac Rehab for all of us who can exercise with the Doctor's approval. It truly is invaluable.

Grateful Heart

Most Definitely

by Grateful Heart - 2014-03-20 11:03:28

Yes, in your class you get to know everyone and they do look for you. It becomes "your group". To this day when I see them (the class is in the same medical building as one of my Doctors), they give me a big hug and we talk for a bit.

In my group, there is a great bunch of former Military guys who stop for coffee after every class. They told a few of us to join them and I would sometimes.

So there I was sitting at a window table, just me and 3 guys one day and along comes acquaintances of mine and my Husbands, looking and waving at me as they walked by and then looking at each of the 3 guys expecting one of them to be my Husband. The look on their face....LOL

Of course my Husband already knew about our coffee stops so when I told him who I saw, we laughed at what they must have thought.............New Rumor!!!

Grateful Heart

Still looking for cardio rehab

by Marinade - 2014-03-21 07:03:51

Hi donr and Grateful Heart, I talked to my electrophyisiologist and she will gladly give me a referral to cardiac rehab, however since I don't qualify for my insurance to cover it (No heart attack, no bypass, etc.) she advised me to call to find out how much my expense would be. Well, would you believe almost $300 a visit! Rats!!! I got very excited when you both had the experience of very reasonably priced programs. I'm going to do more calling around to see if I can find anything else that I can afford. In spite of studies showing that rehab helps heart failure patients, insurance companies have not gotten on board, or at least mine has not. I am not giving up. If I can't find a rehab, I will start looking for a trainer who specializes in heart issues. I live in the Seattle area which is big enought city that I would think there maybe some out there. Thank you both for the information and the encouragement! I am now on a mission.

On a mission

by Grateful Heart - 2014-03-21 09:03:32

Get the referral and go to Cardiac Rehab, let them submit it and go through the process of denial and then appeal it.

I also did not have a heart attack or bypass and somehow was approved without the need for an appeal. I do realize in my case, that was 5 years ago and health insurance policies have changed.

Is the $300 per visit because you would be "monitored"? I'm thinking it must be because that sounds excessive. If it is, ask them at Cardiac Rehab if you could join without being monitored, that was the much lower price for me. (The Nurses and staff will still watch out for you). They may require you to start out being monitored, I'm not sure but it's worth a try.

Grateful Heart

Thanks Grateful Heart

by Marinade - 2014-03-22 03:03:50

Good suggestions. When I called the CR, I didn't ask about monitoring vs not monitoring. I will do that when I get the 'official" CR call telling me they got the referral. I'll also do that when I call other CRs. The one I spoke to said they had never had a patient who paid out of pocket. Well, no wonder! Who could afford $3600 a month?! Thank you for the feedback.

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